Acceptance Archive

13

Alive And Well

4.1.1

“Every man has his secret sorrows which the world knows not; and often times we call a man cold when he is only sad.” ― Henry Wadsworth Longfellow

I visit my occupational therapist (OT) weekly. She’s there to help me develop skills that will enable me to work or simply complete my activities of daily living, such as dressing and grooming. At this point we have become moderately acquainted with each other. I am a fairly outgoing person, when in the mood, and this is the part of me that she sees the most. We were talking the other day and I mentioned that I cry quite a lot.

“What!” She exclaimed. She seemed astounded.

It was nice to hear that she had a completely different perspective of me, one that seems to be closer to the original Nicole.

I like people to know that I do have a life outside of MS. I started this blog in order to highlight and find out whom that person was. It seems like somehow along the way I’ve steered off-road. I’m embarrassed to admit how much time I spend dwelling on things I can no longer do. Or how often I still cry alone.

But apparently, according to my OT, not enough to tear apart my intact personality. So my new goal is to keep that part of me alive and well.

17

Do Nothing

I got a canibus lollipop.

“It’s bad to not do anything for 8 hours but it is sad to not be able to do anything for 8 hours.”

Someone once told me, “Hunger hurts but starving is worse”. So I try everyday to “feed my mind” with some type of activity. I do this because I realize a little activity is better than no activity.

Losing my ability to reflect and imagine is my biggest fear, so keeping my mind active is a top priority for me.

One of my faults is that I probably spend too much time inside the house. I’m also too depended on my husband to find me things to do. So to counteract this, I am always searching for new intellectual pursuits. Sometimes it’s substantial, like writing a 500-word post or speaking at an event. But most times it’s small things like sitting outside watching people walk by. With me, fatigue plays a huge factor so for that particular day; people watching may be all I’m able to do.

I use to be such an active person, so I had to convince myself that physical exercise isn’t the only way to obtain mental simulation. At one point in my life, I would see people sitting around and think they were lazy. Now I know, just because someone appears to be doing nothing doesn’t mean they are actually doing nothing. For me, I use that time to reflect and clear my mind, which lets me sort out future moves. I’m able to find the right paths and create new opportunities for potential endeavors. I call it, actively doing nothing.

So if you ever find yourself being bored or to tired for physical activity, take my advice and do nothing. Because sometimes doing nothing can bring you more to do.

20

Cry Baby

crying

The soul would have no rainbow had the eyes no tears. ~John Vance Cheney

The last couple of days have been painstakingly rough. Even though I had my depression medicine changed, I still find myself crying all the time. Which is embarrassing. I hate crying in front of my husband.

The funny thing is, nothing has really changed. I haven’t lost any new functionality. But still the crying remains.

One time between sobs, I tried desperately to explain to my husband what was wrong but I had no answers. It’s not only frustrating for me but for him too. This worries me because I believe there’s only so much of this he is going to take. (Probably not true but that’s how I think sometimes.)

Shortly after I tried to explain how I felt, I excused myself to the ladies room. Minutes later, I reemerged with the answer.

My cycle was on!

I was so excited because I realized I wasn’t crazy, just emotional due to hormones. Sometimes I forget that I am an ovulating 39-year-old woman. And yes, it is typical for me to have such a sporadic emotional ride. The doctor has even offered to give me medication for it. Maybe I should take her up on the offer.

Problem solved, until a week later and I had yet another crying spell.

Oh no!

I guess crying comes with the (MS) territory.

51

Pride Wins Again

restroom

After my husband paid the bill, the receptionist slowly ushered him to the side and whispered, “It’s getting hard for us to pick her up. We need you to stay if she comes back.”

If?

I have talked about going to the hair salon a couple of times. I consider it one of my few real treats. The problem is, lately the hairdressers have to help me out a whole lot. I need help getting in and out of the chairs for washing. And drying my hair is the worst part. I am already weak and once I get under the hair dryer it zaps all of my remaining energy right out of me.

But nothing compared to what happened during my last visit. I asked the hairdresser to stop so I could use the restroom. I probably needed someone to close the door, help me pull my clothes down and physically get me to the toilet.

But I didn’t say anything. Nothing.

I just rolled to the restroom alone. Was it my pride or did I really think I could do it myself? I’m not sure. But as the urgency to micturate increased, I began to panic. Once I entered the restroom, I realized I should have asked for help. Then before I could make it to the toilet, I fell on the floor and urine spilled from me. It was all over the restroom floor then migrated into the hairdresser area.

I was so embarrassed!

Two women from the salon had to come into the restroom and help me.

After that incident, I really understand their reservations about having me as a customer. I can be a handful. And I must give it to them; they went above and beyond. Often, it’s like they were nurses to me. For this reason, when they voiced their concerns, I could not complain. So when they asked my husband to remain in the salon for the next time I come, I was just ecstatic that I could even return.

I guess MS won this round but I’m not giving up. I just hope my husband starts staying in the salon while I get my hair done. This is huge because I know he doesn’t want to stay there for hours at a time. I’m there for 2 to 4 hours, depending on what I’m getting done. Hell, I don’t want to stay that long either!

Salon Hair

23

Parade Days

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Last week I was in the hospital for two days after having an adverse reaction to my latest prescription. The symptoms were so bad that the doctors first thought I had a stroke. It wasn’t until all of my test came back negative that we linked my sudden change in health to the new medication.

Before this happened, I was excited because it is Carnival time. I have been going to Mardi Gras parades in New Orleans, Louisiana for over 30 years. But this year just wasn’t the same. I can’t put my finger on it but I didn’t have as much fun as usual. My guess is, since I really hate being in a wheelchair, being at a parade in a wheelchair just wasn’t enjoyable. I don’t like when people stand in front of me blocking my view. It’s funny because everyone is nice until the floats start throwing trinkets. Then it’s every man for himself. Also, bladder issues can cause a real headache especially since the portable restrooms provided by the city are not wheelchair accessible.

But my best guess at the source of my newfound melancholy feelings toward attending parades is the fact that I have been extremely tired lately. I am so weak these days that it’s hard to enjoy myself at events, especially ones that take so much energy. Parade days are all-day affairs that can last 5 hours or more. And there are usually multiple parades. The recent one I attended was actually three different parades. This is something I did all the time, but nowadays it’s just too much for me. And being only one day removed from the hospital didn’t help either.

After I made it home from the parades, I decided I would not attend anymore because they are just too taxing on me.

Moments later, following my declaration, I saw a picture posted by Steve Gleason* at a Mardi Gras parade. He helped me put my overreaction into perspective. So now I have decided that I won’t totally stop attending Mardi Gras parades. I’ll just adjust how long and how many I attend.

Happy Mardi Gras Everyone!

*(Steve Gleason is a former New Orleans Saints football player who is now battling ALS – Lou Gehrig’s disease)

Gleason

Hospital

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17

When My Will Is Weak

helping people

It does not matter how slow you go so long as you do not stop. –Confucius

MS is like a thief in the night, stealing the fortitude of its victims. It especially takes advantage of those who have given up or can’t muster the strength to fight anymore.

For me, everyday is a battle with MS. My struggle is not only a movement in opposition to a debilitating disease but also a fight for a fulfilling quality of life. I use every available tool and possible weapon in my personal war against MS. Medicine, food, exercise, and spiritual guidance all play an important role. Most of the time this arsenal is very effective and shields my body from the impinging effects of the disease. But every now and then I am sucker punched with a new symptom that knocks me for a loop. When that happens I try to gather my thoughts and seek counsel from my life advisors, which include family, friends, doctors and my spouse. When my decision-making skills are weakened by sudden medicinal changes these people are able to recognize that I am at my most vulnerable and provide much needed support.

New symptoms steer me towards worse case scenarios and distract me from solutions. I become despondent, believing that my latest flare-up will take over my life. Whenever I am in this situation, MS becomes my personal devil. It spits fire at my soul, burning away pieces of my spirit. First, my confidence and ambitions are damaged. Then my faith and hope are tested until my essence is destroyed to the point that my former self is no longer living. I become a different person who struggles to establish a new purpose. Flashbacks to the individual I used to be haunts my contemporary identity and grow to be the foundation of depression. Malevolent thoughts rage an internal battle that deliberately attempts to control my existence. Suddenly my inward struggles become just as stark as the outward ones.

Every outing is a circus where I am the sideshow freak on display for everyone’s amusement. My life reflects a car wreck that is highlighted by twisted metal and broken parts. As people pass they look and discretely stare, hoping to get a glimpse of my damaged remains. My mind goes a thousand miles an hour, with only the most awful circumstances passing through every few minutes. My entire being is pushed to the edge where I start to conceive alternatives to continuing in my living hell.

At this point I am usually at the end of my rope. Without intervention I am apt to make horrible and regrettable decisions. I have been known to change medicines, begin fad diets and try to isolate myself from the outside world. My support group has been my savior in this situation by not allowing me to become out of touch. I am blessed to have such a compassionate collection of people in my life. They don’t pity me they help me. They stand strong for me when I cannot. They fight for me when my will is weak.

Originally appeared on MultipleSclerosis.net

27

Mourn The Loss

Unhappy

While grief is fresh, every attempt to divert only irritates. You must wait till it be digested, and then amusement will dissipate the remains of it. ~Samuel Johnson

It’s a good thing that my caregiver/husband and I get along, because I never would’ve imagined depending on him so much.

In the beginning of this newfound dependency on others, I was not a happy camper. I probably was defensive to the very people that were trying to help me. It’s just that we all have this picture of what life should look like and my reality just was not matching up.

Nowadays it seems I need help with just about everything. And to make matters worse or more complicated for all involved, I don’t need that help all the time. This confuses the person, normally my husband, as to when to help and when not to help.

Does that make sense?

I know he is only concerned about me. In the meantime, I’m so busy trying to hang on to my last bit of independence by continuing to do what I can on my own. I think this is a good thing.

I also have to accept there are things I can no longer do safely by myself. For instance, I need help getting on and off the toilet. It’s not every time I go, mostly just during the night or early in the morning. The other day, I had a nasty fall in the bathroom and it scared the life right out of me. Mind you my bathroom was newly made handicapped accessible. So, it seems no matter what, falls can happen.

I need help with transferring from one chair to another. That is, transfers from my scooter or wheelchair to the dining room table or to my favorite reading chair. Something I used to do with no problem.

I’ll be honest with you. It’s hard. To make it easier I quickly mourn the loss then I move on. The thing is, if I persist on focusing on what I’ve lost here, I will lose and MS will win once again. And it has taken away so much from me already.

I try to remember that our job as MS fighters is to make the most out of what we can do, no matter how small.